Reflections on a Past Experience

I will tell you a story that involved me sticking up for someone being teased only about three years ago or so. I was at my friend's daughter's Head Start facility, waiting for her to get out of her class. There was this little boy, maybe about three years of age, who was still in diapers. I heard the teachers talking out in the open about it. They said his mom sent him in diapers because some medication he was on was giving him diarrhea. The little boy was crying because he needed his diaper changed, and one of the teachers harshly said to him in a loud voice, "You need to wait and be quiet. You should not even be wearing diapers anyway. You're too old."

 My heart ached for the boy because I knew how he felt, and the poop was likely irritating his bottom, especially if it was diarrhea. I had enough of this bullying and ignorant behavior, and I was determined to show these moronic teachers that age does not determine when someone does or does not wear diapers. I was unable to stand by any longer and watch this go on and walk away and do nothing. I am not one who can stand by and silently watch injustice. I have to get involved. The Bible says so, anyway.

 I jumped up from where I was sitting, swung my diaper bag over my shoulder and opened it up. I pulled out one of my diapers in full view, saying, "You know? I got an F in toilet training! I am 26 and still have to wear diapers. I have a medical problem. I can't control my bladder at all, and I sometimes poop myself. So, stop bullying that little boy and change his diaper, so he can be comfortable. I know how it feels to sit in diarrhea when I do it on myself and can't get to a place to change fast enough. If I knew who his parents were, I’d tell them how you are treating their child. You should be ashamed of yourself!" I said it loud enough so all the parents, staff and anyone else could hear, and I swung my diaper around in the air, so all could see it. Everyone was silent. I had the attention of all in the waiting area.

 Seconds after my outburst, the boy was taken into the bathroom and changed. Other teachers and parents came up to me and asked me about how incontinence impacted my life. I politely answered their questions. I also got a number of comments from other parents and teachers about how brave I was and how I’d be one who stands up and makes changes for the better someday. I also got a few hugs from some.

I felt so proud of myself. Not only was it a teachable moment, it was a moment when I could stand up for someone who was helpless and could not stand up for himself. Children are the most helpless people of them all, and I cannot stand by and watch one get mistreated without doing something.

Disappointments and Letdowns

Wow! I really have not posted to this blog in a long time. I thought I had updated about my meds failing. I guess that is what happens when you get so busy. Anyhow, here is my post ranting about the most recent failure.

--------------------

So, here it is. I am so disappointed. Success with Enablex was short lived, and I am back to the twenty-four/seven diaper wearing. I thought I was going to be able to tolerate it, but my body rejected once again. I kept getting severely constipated after a period of time on the meds, and the nausea was excruciating. The longest I lasted was approximately a month.

My doctor tried to prescribe me another med. It has no generic and costs over $200 a month, even with my insurance. That is a joke. I do not want to spend that kind of money just for another med to fail on me. After that, there is no hope for me and this overactive bladder of mine.

I am bummed. I feel let down. I thought for sure I was going to be liberated. What is it going to take for me to have a normal life? Is that too much to ask? Really? I have all of this underwear I cannot even wear. I might as well just donate it to the thrift store or some poor folks who are desperately in need. I did not wear it all that long. Or, should I hold onto it for the next time there may be some fake-me-out success? I am so tired of being a part of this vicious cycle of success and fail, success and fail. I am tired of riding this roller coaster. I want to get off, for goodness sakes!

Some people tell me to just accept it. They try and tell me it can't be that bad and that there are worse things that can happen, like cancer and having a terminal illness. I suppose that is true, but it does not change the fact I have to live with this freaking yoke that smothers me. Granted that diapers allow me to lead a productive life, socializing with friends, working, being active outside the house and traveling. But, diapers are also a form of bondage to me. Diapers cause hassles that people who are without incontinence never have to face, such as diaper rash and yeast infections that occur often. If you have sensitive skin like I do, then it can be a whole barrel of fun. I also find diapers inconvenient sometimes because the rest rooms are not really set up to allow discrete disposal of them, so others cannot see, and the stalls are so small. Not to mention, you have to find a place to change when you are out. And things are going to be real interesting when I fly to Florida this summer. I wonder if I am going to have to strip because I am wearing one. That will be humiliating, as if incontinence is not already humiliating enough.

As far as accepting my condition is concerned, I have. What some fail to realize is that there is a difference between accepting and liking. One can accept having AIDS, but it does not mean they love having it. It does not mean that they won't have bad days and feel down on themselves. Healthy people are so clueless! They understand nothing of having a chronic problem. So, it is so easy for them to spout out of their mouths what we need to be doing. I have a feeling it if were them, they'd be crying about it like we do. They'd have good and bad days like we do. They'd be singing a much different tune. Then where will their praises about just accepting it, chilling out and getting over it be found then? Well, they won't.

I have accepted my condition enough to the point that I am very open about it. That is obvious, since I post my feelings, my triumphs and my failures with incontinence on this public blog and share the posts on Facebook. I am comfortable talking about it. I am not ashamed of it. However, that does not mean I love urinating on myself or love having to wear diapers. I have my good and my bad days. I sometimes cry and complain, and by golly, I am more than entitled to do that.

I also want to help others who have this condition get to a place in their lives where they can feel confident about themselves and have the courage to lead normal lives. Incontinence causes many to become reclusive because they are too embarrassed to leave their homes. There is so much shame and stigma surrounding this condition, and it all starts with the things that children are told during potty training, like underwear equals big boy or girl and diapers equal baby, potty equals good and accident equals bad. Being the spokes person for my condition and working hard to educate the public and break down the walls of stigma and shame is the way that I cope with having this condition. It gives me purpose and allows me to forget my feelings for a bit, provides a release for me and enables me to feel good by helping others.

I do want to end my post by saying that I am thankful for a supportive family. My family never judges my condition, and they never ridicule me. I am truly blessed because many with incontinence are not so fortunate. Some have been brutally embarrassed by parents and relatives because their families feel like they can help it and are doing this stuff on purpose and for attention. I cannot tell you how many horror stories I have heard during my time as an advocate and educator. Some are so heartbreaking and even disgusting. This is what keeps me doing what I do. and while I have been ridiculed and persecuted for talking about my condition so openly, it just demonstrates to me all the more that there is a need for people who have courage to stand up, go against the grain and show the world that incontinence is a health problem like anything else, and it should not be so stigmatized.

　
　
　

The Crisis on the Train

The date was Saturday July the second. The weather was hot and sticky, though, that did not matter to us. My friends and I were traveling to the National Federation for the Blind convention that was taking place in Orlando, Florida this year. We were excited.

All five of us hopped aboard the train. The group included my friend Tyron, my other friend Tiffany, and Lavonnya and her six-year-old daughter. All was going well, until I discovered that there was a major problem.

I needed to change my diaper. I looked into my bag for the diapers that I had packed to take with me on the train, and they were gone! Immediately, I felt my heart drop into my stomach. I felt myself begin to sweat and get anxious. After all, this was a nineteen hour train ride, and one diaper would not hold me the entire way through. With complete and total urinary incontinence and partial bowel incontinence, it would not even work!

Tiffany noticed that something was wrong. "Are you okay?" she asked.

"Hardly," I said back.

"What is wrong?"

"Um, you know how i need diapers because I am incontinent?"

"Yes," Tiffany said.

"Well, the ones i packed for this trip are no longer there. I think that they fell out of my bag when the conductor made me change seats before we took off. What in the world am I going to do? We are only three hours into this trip! The diaper that I am currently wearing is not going to last!" By this time, I could hear my voice starting to rise, as I began to slightly panic.

"Try to calm down," Tiffany said.

"Calm down?" I asked. "How on earth do you figure I do that? Do you know what is going to happen to me? At any time, the diaper I am wearing could spring a leak if I go too much. Then, what in the world do I do? Things will be worse then. I wonder if they could stop the train so I could buy more diapers." The diapers in my carry on were the diapers that I was to use for the entire week. I'd now have to buy more when I arrived in Florida.

"They cannot stop the train," Tyron and Tiffany both said.

"It is an emergency! I need diapers! Pee will get everywhere and it could get worse than that! Don't you realize I have complete and total urinary incontinence and suffer from bouts of bowel incontinence? Oh, this is going to mean big trouble!"

I took a couple of deep breaths and called my friend Pat on the phone. Pat is a really rational person, and she always has a good head on her shoulders. I was all out of ideas for the moment.

We talked for a bit. She told me that I was going to have to not drink the rest of the time on the train. She also told me to make several bathroom trips an hour. Now that would be hard, considering I have no real knowledge of when I'm going to go. But I figured that I'd have to do whatever it took to avoid embarrassment. Unfortunately, though, I lost signal.

I got off my seat to make the first bathroom break. On the way, I was praying to God. While walking, one of the women came up to me that I was talking to earlier and asked me what was wrong. I figured I'd tell her. What could it harm? After all, she could have a solution.

"Well, I do not know how to really explain this, but I'm incontinent. I can't control my bladder at all. Sometimes, my bowels do not work well, either. It is kind of like what a baby does. I have to wear diapers. I lost all of mine when I moved seats before the train took off. They may have been picked up by now and thrown away. I checked before I got on the train, and they were in my bag. Now, they are not, and I do not know what I am going to do."

"Well, I have some pads for you." She grabbed a few thick period pads out of her purse, wrapped them in a plastic bag, and then handed them to me. I did not want to hurt her feelings and tell her they really would not help too well. I went ahead and took the pads from her, and I suddenly got an idea that would save me. I was going to take the pads and stuff them into the diaper I was already wearing, so it would make the diaper last a bit longer. That would have to work. It would be uncomfortable, but there was nothing else I could do.

I went to the bathroom to do this. I did not use all of the pads because i wanted some others for later. But when I was walking back, something unexpected happened. I ran into an old friend who was also traveling to the same exact place. It was my friend Velma.

"You okay?" she asked.

I proceeded to tell her all that was happening. And she had an idea that I did not think of at all.

"You can fit extra-large baby diapers, right? I mean, you look small enough. I could have sworn you told me that before."

"Yes, I can. I can wear the Loves size six and Pampers size sevens."

"I'm going to go around and look for a mom or dad with a big toddler and ask for a couple of diapers for you to have. I'll explain what is wrong."

"You'd do that?" I asked her.

"Sure. I want you to be comfortable."

"Velma! Thank you so much!"

I went back to my seat and waited. I got some signal, so I called Pat again. I proceeded to tell her what transpired and apologized for losing her call. I explained that the signal was sporadic. She was cool with it. She was also happy that there was a solution. We got a little further than that, and then the call died again.

Velma came back to my seat, and the mom that was giving me the diapers was with her. This time, I did feel a bit embarrassed and could feel my face growing hot, but I remembered that I was an advocate and that there was no need to be embarrassed. It was up to me to set an example.

She is the one who needs the diapers?" the mother asked.

"Yes," my friend said.

"Ma'am, I am incontinent. I cannot control my bladder and sometimes, my bowels act up. I lost the diapers that I had when the conductor made me move seats before the train took off. I know that by now, they have been trashed."

"Well, here you go then," the woman said, as she handed two diapers to me. "This should help you, until you get to your destination."

"Oh, thank you so much!"

"You're welcome," said the mom, and then she walked away.

I turned to Velma and said, "Velma, thank you so much. You really made my trip. I do not feel so anxious about what could happen."

"Hey, that is what friends are for. Besides, Jehovah knows what we need. He takes care of us. He knew your needs, and I just happened to be there at the right time."

That was so true. I prayed during that whole ordeal, and it all worked out.

I went to the bathroom, changed into one of the diapers, and I then walked to the dining car to get my supper. I ate, had a few bottles of orange juice, and settled down to get comfortable. I was so glad that I was going to be able to sleep that night in peace without having to worry about springing leaks or even waterfalls. I was going to enjoy my train ride after all.